Calli was putting together a trampoline and got a pain in her back...
It hurt so badly that she could not even jump...
Did you ever go in a flight simulator? Where you flip upside down and all around, and go headfirst into the ocean, only to flip right straight up again before you hit the surf?
Or on a tilt a whirl?, and you are on it, but don't want to be on it, and someone keeps turning that dumb wheel to make it go faster and faster and faster in one direction, and then boom, you turn the corner and you are hurled the other way.....
I never did like those things.
They always made me so sick
I would lose all sense of direction
and reason
and balance
Holding back the barf, as it crept up my throat.....closing my eyes tight and holding on and waiting to regain center....
It's kind of felt like that for the last year.
This month is such an emotional and unreal time for us.
Everything is hitting the fan.
My dad is gone...it is still unreal
My precious mother in law is gone....
My kids are so sad, and mad, and at times it just hits us all at once...
daddy carries Calli a lot
Calli has been having a good time of it trying to walk, eager to move forward, in yet another new normal..
she was getting stronger, and then she sprained her ankle-another set back, and then she got an abscessed tooth- does it ever end?
recently, her face and body have had to endure so many drastic changes from the steroids they have her on. If you see her- she is not fat, she is swollen. It hurts her though, she is in no way a vain person, and no matter how much we tell her how beautiful she is....she still does not want to look in the mirror at her own face.
before steroids- in February
She feels lost in her cheeks.
After Steroids- May
She said with tears yesterday, that she has lost her chin. The tremors that make her hands shake and unable to write effectively are bothersome and the acne, dry skin and horrible stretch marks just add to the yucky effects from the steroid-Decadron.
this song is for you Calli :)
a lady bug said hello to Calli last week
This month is full of promise...but those promises, are strapped to the backs of pain, and hurt, and loss, and death.
With death comes life.
I don't think anyone can realize how much Calli has lost, how much of her has died. No friend, or family member can see it or understand it or even know it, unless they are with her, caring for her, helping her, watching her and being with her each day...
Aidan is one of those people.
He feels bad going outside and climbing trees, or running with the
dogs...
he knows she is watching him .....in pain, in sorrow, in yearning to be free and run and jump and climb like he does.
Aidan and Nana did the "Rocky" steps, as we watched
The other day, he was so upset, and having a no good, bad, really horrible kind of day....
I just thought he was mad and being a booger
At the end of the day, as we were tucking him into bed, he wrapped his arms
around me and cried.
"Mom, I thought Sissy was dead today....I saw her laying in the hammock and her eyes were closed, and I did not see her
breathing, Mom... I thought she was dead."
Could you imagine the world that is on his shoulders?
Inside of his 12 year old heart, mind and self.... he holds secrets that none of you know or are aware of.
Inside of him, he holds hurt and pain and loss and death.... pictures in his memories..constantly parading on the forefront of his mind, all day, every day.
He puts on masks of anger, and toughness and hides his hurt, his pain, his fears.
Can you see him? Can you see past his masks?
Do you remember when you were 12? How easy it was, but how hard it seemed, growing into a new body, new emotions, new hormones...
now add to it- loss of your two best friends- your grandfathers,
and add the loss of your grandmother
and add the fact that your sister has this monster she is fighting....
and your friends have disappeared
and everyone takes everything personally and blames you
and the people you look up to, and trust and depend on for help and acceptance and guidance let you down
blame you, don't have time for you....
give up on you...
Could you...for one second, or minute pray for Aidan? Please?
hanging out in bed with my Sissy
Calli and Aidan loved bell choir. It was a struggle, and very hard each
week, but Calli and Aidan pushed through.
Thank you to all who came
out to see them both ring and support them- it meant the world to them.
Calli was honored by the choir members for her perseverance, and was
told that the choir can't replace her, and that they have all learned
from her strength and dignity through the last year. They presented her
with two of the bells that she rings-with the engraving of her name and
"In Christ Alone, my Hope is Found."
All over the world Life presents us with conflict, and disagreements, and relationships that
are done wrong and out of order, people are misled, lies are told
etc.... People all over the world have two choices. Stay quiet, or
speak up. At times it is appropriate to do both- have you ever read the
bible? It was and is never a popular thing to speak up.
People pay for speaking up.
It is a risk, not many are willing to take.
I have taught my children, that if they see something wrong, they must speak up, they must take that risk- they must count the cost and take courage and do what is right.
When my children are in the line of fire, or being affected emotionally, physically, or spiritually in a matter, or a situation, being blamed or talked about-I will always speak up.
Sadly, instead of facing and working through a matter, a simple matter, people find easy ways out- the same ways out that have been used for thousands of years- avoidance, shifting blame and shunning.
It hurts to be "Let go." It hurts to be cast aside, It hurts to be given up on. Someone told me once that maybe conflict is God's way of showing us who he wants us to surround ourselves with...not saying we should not be around people that irk us...hey, I am one of them! What I'm saying is, for right now...my children are hurting and needy and need special care and grace and hearts that will love them and accept them and are willing to see past our outsides...to our hearts. God has a way of revealing things , revealing hearts through conflict, through bruising, through disagreements. His way of revealing is strange and always creates an environment to learn and grow.
I know that Mike and I do not want people around our children right now that will give up on them, reject them, or un-invite them into their "Ministry."
It is God's ministry anyway, isn't it? Aren't they all?
Who did Jesus minister to anyway?
The perfect?
the law-abiders?
the calm ?
the sane?
NOPE
the rejects!
the outcasts!
the insane.!
the angry!
the hurt!
the lepers!
the law- breakers!
God's ministry is to the poor,
the needy..
I'm not talking about money either..
I'm talking about spirit, the poor in spirit,
the needy ones,
the ones that need you to believe in them,
and HOPE the best for them,
and teach them to overcome
the ones that need you to help them heal and move forward
the ones that need you to look past their faults... right to their needs-
the needs of a 12 year old boy...
he needs people to believe the best of him he needs people to never give up on him
he needs people to accept him, not reject him
he needs real Christians who are "willing swear to their own hurt and change not" their words, their commitment that they made to him- to teach him...no matter how hard the winds blow or how loud he gets, if he is wiggly, or giggly or angry or sad, or misunderstood or needs to explain or explode...
One
day some parents brought their children to Jesus so he could touch and
bless them. But the disciples scolded the parents for bothering him.
When Jesus saw what was happening, he was angry with his disciples. He said to them, “Let the children come to me. Don’t stop them! For the Kingdom of God belongs to those who are like these children.I tell you the truth, anyone who doesn’t receive the Kingdom of God like a child will never enter it.”Then he took the children in his arms and placed his hands on their heads and blessed them.
Do you think those kids were perfectly quiet, or still, or had the greatest manners or respect for their teacher, Jesus?
If they were normal kids, and I am sure they were...I bet not. All things are made beautiful in His time
When things like this happen to a child who has already been through so much, already been through the ringer over and over and over again.. it makes me think how on earth people can be so blind and prideful. This makes me think very deeply and sadly...I wonder how God feels about it?
MAY IS BRAIN CANCER AWARENESS MONTH DID YOU KNOW THAT GRAY IS BRAIN CANCER'S RIBBON COLOR? HANG A RIBBON ON YOUR TREE OR PUT ONE ON YOUR CAR PIN IT TO YOUR JACKET
BECAUSE GREY MATTERS :)
WE ARE WRITING HOPE ON OUR OUR ARMS- and keeping it there all month!
WHEN PEOPLE ASK WHY- WE TELL THEM ABOUT CALLI
My Mom's arm
EVERY SINGLE DAY IN AMERICA
12 CHILDREN ARE DIAGNOSED
WITH A BRAIN TUMOR.
CALLI'S WAS DIAGNOSED
IN HER SPINAL CORD,
BUT IT IS STILL A BRAIN TUMOR.
AND AN UGLY ONE
you may not know what you are looking at... but there should be a nice, dark uninterrupted- black spinal cord in there
can you see which lamina bones are missing? or "thrown back in" as Dr. Storm said :)
THERE ARE NO WARNING SIGNS
NO SELF EXAMS
NO KNOWN CAUSES
THERE IS NO HUMAN CURE BY THE TIME THEY UNCOVER THEM.... THE CONTROL CENTER FOR YOUR BODY....
YOUR MIND THOUGHTS EMOTIONS AND MOVEMENTS ARE ALL EFFECTED, DEVASTATED, SOMETIMES DESTROYED
Aidan's arm (Korean for HOPE)
According to THE NIH WEBSITE, CENTRAL NERVOUS SYSTEM TUMORS AND CANCERS, LIKE CALLI'S ONLY RECEIVE $7 MILLION FOR RESEARCH FUNDING
By
comparison, BRAIN CANCER- $165 MILLION AND
BREAST CANCER TOPPED THE LIST AT $625 MILLION
SOMETHING IS WRONG WITH THOSE NUMBERS
my arm
PLEASE BELIEVE
HOPE
AND PRAY
FOR CALLI,
AND THE MANY OTHER CHILDREN WE MEET
AND HAVE HAD TO SAY GOODBYE TO
IN THE LAST YEAR.
I will post Mike's arm as soon as we get to do it tonight!
Sorry it has been so long since I have updated you. It is hard to think, let alone write. I really don't want to write right now. I am tired, and my heart hurts really bad and I seem to be quite foggy-brained right now.
I wanted to start by thanking those that are bringing us meals-and signing up on the meal sign up tab to help. It helps so much. Also to those who have sent us grocery and gas cards- THANK YOU! I also wanted to thank those that have sent cards to Aidan and Calli, they feel really special and loved when you do that. Imagine Aidan's surprise when he got a really awesome package from Roller Derby Girls! He smiled so big at all the cards. Thanks so much for thinking of him too. He has had a very hard time and his life is upside down right now.
So, I know you all are waiting for an update on our family, especially Calli. When I asked Calli what she wanted me to write, she said, "Mom, write nothing, or write everything-the truth, you have never held back before so don't do it now."
I'll start with this song Calli wanted me to post this song by Barlow Girl- called "I Believe in Love." Calli especially loves the story behind the song about a man who was a prisoner in a concentration camp... and after it was shut down, this quote was found on the wall.
"I believe in the
sun, even when it's not shining. I believe in love, even when I don't
feel it and I believe in God, even when He is silent."
here are the Lyrics-
How long will my prayers seem unanswered? Is there still faith in me to reach the end? I'm feeling doubt I'm losing faith But giving up would cost me everything So I'll stand in the pain and silence And I'll speak to the dark night
I believe in the sun even when it's not shining I believe in love even when I don't feel it And I believe in God even when He is silent And I, I believe
Though I can't see my stories ending That doesn't mean the dark night has no end It's only here that I find faith And learn to trust the one who writes my days So I'll stand in the pain and silence And I'll speak to the dark night
I believe in the sun even when it's not shining I believe in love even when I don't feel it And I believe in God even when He is silent And I, I believe No dark can consume Light No death greater than this life We are not forgotten Hope is found when we say Even when He is silent
I believe in the sun even when it's not shining I believe in love even when I don't feel it And I believe in God even when He is silent And I, I believe.
The night before my dad died, Mike and I were in the hospital with Calli, who at the time could not walk much at all without the help of 3 other people. That night, her doctor came in and told us that the cancer that was in her spine, had spread.. a lot. To use her words, she said it was like a "big fat sausage" in the middle of her spine...cutting off her nerves, paralyzing her. They said there were many other cellular changes in several other spots as well and yada yada yada.... (as my dad would have said). They said they were so very sorry, that there was nothing else that could be done for her.... to prepare for what they told us last June- that she would die from this disease. All I kept hearing in my head over and over again was "It's only a shadow, Lucy, it's only a shadow."
That was at 8pm. My first call was to my dad and mom. My dad was heart broken, but hopeful and said, "Lucy I know my arm is short right now in how I can physically help you, but I want to help, what can I do? I love you, she will be OK." My dad himself, was feeling so badly and just wanted to help. They had planned on being there first thing the next morning.
That night, I just could not sleep at all, not from worry, I just needed to pray and read the word and I turned on some worship music and asked God to talk to me, to show me... to tell me... to speak and give me something to cling to. I waited and waited and silenced and stilled my soul, and as clear as anything, I heard, "411 and 412." Well... 411 and 412 of what Lord....huh? So, I just turned to page 411 and 412 in my bible, and it was the first two chapters of the book of Job.
We had been compared several times to Job in the last year, and had even had the pleasure of being counseled by some of Job's friends :) So, I sort of chuckled...and read it. The thing that stuck out to me the most was that when all this crazy bad stuff happened to Job, he did not curse God, or turn his back on God, he tore his clothes off and.....WORSHIPED GOD and said, "The Lord gives and the Lord takes away, but blessed be the name of the Lord." The bible says that through all of this Job did not sin or blame God!
Yes you read that right, when all his kids were dead, and a bunch of other terrible things happened to him...he worshiped God. He would not betray or blame God. As a matter of fact, things got even worse for him, now his own body was being afflicted and after his wife saw him worshiping, she told him, "Why don't you just curse God and die!" He replied with another nugget..."Should we indeed only accept the good from God, and not accept the adversity?" And even in this, he did not sin with his lips.
so, in the middle of the night, God comforted me in ways that no man or thing can. I felt strength and courage, because I want to worship God no matter what, I do not want to blame him, or even blame his will for all that is happening...this was a reminder to me of what God wants us...me to do..worship through. Around 3 am, I finally fell asleep.
My dad died at some point during that time. At 6:45 am, my mom called Mike, he was the first person besides 911 that she called. My dad was dead. Is this real? Could this really be happening? This is too much to bear, we have not even fully grieved Mike's mom's death let alone the report from the night before... and now my Daddy is gone.
It is really hard to accept. I did not get to say goodbye, I mean I said I love you Daddy, see you tomorrow, the night before, I said goodbye.... but not really. If I knew he would be leaving, i would have told him, no, I need him here, I need you Daddy- no matter how crazy yo or i get, we get each other! You are the only one that really gets me Daddy, we had that- I have your nose, and your lips and Calli has your lips too, and I kiss her a little longer now, and pretend it is you, and I am saying goodbye, and I don't care if that is weird. I love you more than I could ever express, and I am sorry for not showing you as much this past year and for being so very busy, that I did not realize how fast you were fading... I am sorry you hurt so much, and that I let you down, I love you.
I feel cheated, and I am angry and sad and do not understand at all what is going on. But I am not mad at God. I am mad at the devil- he is the ruler of this world, he comes to steal, kill and destroy and he has. Sometimes we are robbed. I feel robbed, my kids feel robbed, my husband feels robbed.
After Mike told me and Calli, I lost it. I crumbled and knew I had to go be with my mom and get Aidan. The whole way I played worship music and screamed and cried and wailed. When I finally got to Aidan, and he saw me show up at 8 am, he knew something was wrong, he thought his sister had died. When I told him it was his beloved Poppy, he screamed and cried. We went to my mom's house, and my sisters and brother-in-law were there, and since we had just been through all of this less than a month ago with Mike's mom, I helped my mom with making arrangements. My sisters worked hard to get all of his military honors in order, and made sure that all of his medals and pins were there. I brought Aidan back to the hospital with me, and we broke the rules that night and Mike, Aidan and I slept there with Calli.
That evening, we had visits from dear friends. We read scriptures, prayed, laid hands on Calli, and spoke and declared God's word, God's reports over her life. The Lord spoke greatly. The Word of God divides between even soul and spirit. Soul is our flesh, our will, our emotions, our life etc...- our spirit is the part that connects to God- all that soulish stuff is put aside and there is a true spirit connection- we are not a spirit, we are a body, a soul, but with a spirit that connects intimately with God.
The next day, I had to go to the funeral home with my mom and sisters, and I had to leave Calli again, and it was very hard to do, but Mike was there with her and Aidan was too. I knew I had to be back by 2 pm for her Brain MRI- she was going to do it with out being put to sleep. While we were at the funeral home, I saw my daddy. He looked so peaceful, and it was unreal, I kissed his lips over and over, they were always so big and plushy, and his nose so big, and always got in the way..like mine does.
I cried and screamed and cried and screamed the whole way back to the hospital. I am certain people on the Schuylkill thought I was nuts. I had put worship music on, but with every single note, every song, my heart just bled- it was mush, absolute mush.
I made it back 20 minutes before Calli's scheduled MRI, but when I went into the hall, she was there with Mike and was all done! She did it! Mike went in with her- he never had before, because we thought his eyeball might fly into the machine (that's what they tell you ya know, if you ever had metal in your eye- which he has)...but it did not fly out! So what do they know?
That night, we all slept there again, and the next day we received more bad news- Of course it would be bad. So her brain looked good on the CT scan, but on the MRI, there was a tiny spot- and some shady areas on her brain stem that were there last month, but they said was blood before...they looked suspicious- but did not light up. GBM, Glioblastomas light up.
To me and Mike, that tiny spot looked like an orb- ya know those circles on pictures that people think are angels.....Mike actually said, Look, there is an angel in her brain. The doctor said that there were weird shadows, but nothing lighting up, she said she could not explain it, but in the same breath, said that it can't be anything else but cancer. shadows- hey, It's only a shadow. OK God, you told me that the other day, it's only a shadow. It's not the real deal. A shadow of me is only a shadow, it is not me. yeah though I walk through the SHADOW of death, I will fear NO evil, you are with me!!!
It was clear to me. This is not unto death. I don't care what they say, what they think they see, It is only a shadow.
I am not in denial- I am seeing clearly- everything else may be foggy, but this I see, and this I know, that the moment after Jesus and my Dad were hugging and he worshiped him, he was tugging and pulling at Jesus' robe while He was talking to the saints, and saying..."Excuse me Peter and Paul for my Folly, but Jesus I need your ear for a minute.just me and you OK?...what about Calli? Do you see my granddaughter down there, Jesus, listen to me..you gotta do something about this...." I can see it now, I can see Mark and Linda, patiently saying, "Simmer down Matt...but Jesus, could you please do something...." they are also agreeing and advocating with Jesus, on our behalf for Calli to Jesus-who is the Advocate for us to the Father.
After two more days and many trainings and safety assessments, Mike and I felt confident enough to bring Calli home. At this point she was not allowed to walk- really could not walk without someone lifting her leg for her, because she could not lift them. We had a rough time getting used to Calli's physical challenges- It has been been so hard- like having a newborn, up in the night several times. The first week was so hard, trying to grieve and be a family, and get used to new routines and challenges, and take time to make picture boards for my dad's funeral, and deal with other familial drama- it just never ends!
We made it though, and each and every day since April 1, Calli gets a little stronger. No one understands why. This is Calli- she will never ever ever ever give up. She got right back up on that horse too! At horseback therapy they made adjustments,and she is riding..at Physical therapy each time she goes, she meets and passes the goals that are set for her. At occupational therapy, which she just started, she made a goal and achieved it this week. She will not give up. I will not give up.
My mom, is taking at least 6 weeks to come and help me with Calli and the house and Aidan and I need her. She does my laundry, and helps Aidan with school, and does so much and is there to support me mentally as well. I am so thankful for my mom. I know she wanted so badly to be there for us this past year, but could not- working 65+ hours each week at the Post office and taking full time care of my dad. Mike, Aidan, Calli and I are just so thankful for her in our lives. Besides it is a good distraction, and healing also for her to be here with her grandchildren.
Losing my father, was devastating. Not many people realized how much they truly loved him or would miss him. As one person said, He did not know or even realize how far or much Matthew had gotten into his heart. It hurts...my heart physically hurts. I cannot stop looking at pictures and remember my time with my dad. There was a time in my life, where I felt sorry for myself, and was deceived and believed the lie that I never had any good times as a child with my father, that it was all hell, and heartache...well I was wrong, I was lied to by the devil. My father loved me so much. My father had so much to deal with himself,and became a hero to a widow and her 3 young babies,and soon after had me...he struggled as a young man to raise a growing family while dealing with much past hurt and pain and rejection from his own past. He never dealt with it, it came on too quickly. I understand and understood my daddy. We are much alike. My dad was like Job, he never blamed god, he worshiped God through all the muck, He was never ashamed of God, or the Bible, and he always took the blame, even when things were not his fault.
I miss my dad very much. I have at least 43 messages from him saved on my cell phone from just the last month. He called me every day,and just wanted to talk- even just for a minute- he had nicknames for me, and I'm never going to delete those messages. I have crazy messages too that he left, when he was out of it, and his brain wasn't working right, and he was all alone. Actually I have every message from him for the last year and a half. I am not sure how to move on, but I know that I have to. I am human and like everyone else, I just want to curl up in my bed and cry. And I do, but then I turn over and see Calli and she is worship- She is the very act of perseverance and long suffering and courage. Life must keep going
So we keep going, and moving and as far as Calli goes, we are waiting on the Lord. no more chemo, or treatments they didn't work anyway.
Last week we were watching the new Karate kid, and Mr Miagi, or whatever his name is in the new movie, was trying to teach Will Smith's kid to be still. The kid said "I don't like doing nothing!" and the Instructor said, Being still is different than doing nothing.
So very true. That hit the center of my being. We are not doing nothing, we are being still.
Then the next day, a friend of mine told me to read 2 Chronicles 20- I did- wow that hit the nail on the head! To sum it up in my own words-
there was a king, and a bunch of armies were totally lining up to kill him and conquer his city- and they were surrounding him on every side. They were all scared and the king said- OK, wait we are all gonna fast and seek the Lord for what to do- so they turned to God, and sought the Lord and fasted all together and they reminded God of the time he delivered them before, and asked God what to do next.
God told them to get ready,and face them, but to put down their swords and battle gear- but to go and face them the next day and not to be afraid and stand firm waiting and watching, because this battle was God's and they were to stand firm, wait and watch the Lord deliver them out of this- without fighting.
So the king told everyone to believe and to worship God, and the next day they went out to face the armies without their battle gear and again the king, said- let's worship as we face them, and as they worshiped, they looked and saw every single one of their enemies was dead! They had all turned on each other and killed each other- no one escaped- not one!
So all along, I have been praying that the bad cells just eat and devour one another- and as we worship and surround Calli with worship of God- not worship of Calli or energy, or nature, or things, but worship God...as we all worship God-that is going to happen! So what are YOU surrounding Calli with today, what thoughts are you thinking about her? In those moments you are alone, or talking about her, are you talking or thinking about when she will die? STOP IT! When those thoughts come, (and they will) just SING! WORSHIP! BELIEVE! Don't come around with a frown and don't believe the report of death- sing and worship through it- and believe as you are singing that as your voice raise to God that each and every cell that is bad in her body is at the moment devouring and killing each other. Mike finally went back to work yesterday, and it was my first day alone with Calli today, as we went to CHOP, but we did it! We were so encouraged today, when we went down to eat in the cafeteria for lunch, we never do this! I always pack a lunch- but we were encouraged when someone who reads our blog recognized us and came up to us and said how it encouraged them! On the way home, I stopped and bought Ca;;i a good old fashioned HOPE chest at the thrift shop. We are going to put things in it for when she gets married:)
Back to the song....what do you believe?
I believe in the sun even when it's not shining this is a picture of Calli today:
YOU ARE INVITED!
Please if you can, come watch Calli and Aidan ring their last bell choir concert of the year, at Franconia Mennonite Church, on Friday, April 27, and 7 pm. It is free! Calli will be ringing! Even though she cannot stand for more that 3 seconds on her own, God showed me a way to hold her up, so that she can ring! She has worked so hard, and it takes so much of her energy, but it is amazing and awesome to watch these kids ringing! Come and see these awesome kids- and support Calli and Aidan and this ministry.
Sunday, April 1, 2012
I will never forget the many many many times
you sang this with me Daddy,
going to Florida, the whole way down,
all we listened to was
the Moondance album by
Van the man Morrison.
It is a brand new day Daddy.
BRAND NEW DAY
by Van Morrison
When all the dark clouds roll awayAnd the sun begins to shine
I see my freedom from across the way
And it comes right in on time
Well it shines so bright and it gives so much light
And it comes from the sky above
Makes me feel so free makes me feel like me
And lights my life with love
Chorus:
And it seems like and it feels like
And it seems like yes it feels like
A brand new day, yeah
A brand new day oh
I was lost and double crossed
With my hands behind my back
I was longtime hurt and thrown in the dirt
Shoved out on the railroad track
I've been used, abused and so confused
And I had nowhere to run
But I stood and looked
And my eyes got hookedOn that beautiful morning sun
And it seems like and it feels like
And it seems like yes it feels like
A brand new day, yeah
A brand new day oh
And the sun shines down all on the ground
Yeah and the grass is oh so green
And my heart is still and I've got the will
And I don't really feel so mean
Here it comes, here it comes
0 here it comes right now
And it comes right in on time
Well it eases me and it pleases me
And it satisfies my mind
And it seems like and it feels like
And it seems like yes it feels like
A brand new day, yeah
A brand new day oh
.JPG)
.JPG)
.JPG)
.JPG)
